Happy Rare Disease Day!
Like many patients with a rare disease, the reality is many of my doctors are not in my city. So I travel to larger centres for treatments or appointments with specialists. When I was little that meant flying from Saskatchewan to Vancouver for a meeting with the Vascular Anomalies Team at the Children’s Hospital, according to Google, a 1,726 km trip. Now it is only 3-4 hours away, but it doesn’t change the fact, as raised by so many this Rare Disease Awareness Month, access to local care is critical. I was lucky, at least I could stay in Canada for my care, while many others travel across countries to access doctors and care.
At least with some time off, I was able to celebrate a positive appointment with my Ophthalmologist and my 30th birthday in a city I love. So, from a now 30-year-old, Happy Rare Disease Day!
Would you also like to contribute? Please send an email to president@cmtc.nl
